Well, Katie, Edward and I have completed a 120-hour whirlwind tour of various medical facilities, starting in Charlottesville and ending in Philadelphia. Let's review.
Monday
Our first day was relatively straightforward. We saw our pediatrician to discuss our recent diagnosis, its implications and the steps moving forward. He also had to get his Synagis shot (a monoclonal antibody against respiratory syncytial virus - RSV - which is given to most preemies). Due to his excellent weight gain over the past few months, he unfortunately now requires two needles to complete this weight-based shot. In other words, he hates this with a passion.
Tuesday
We started Tuesday with a visit to the Audiology Department. Part of the chemo regimen that Edward will be prescribed can cause ototoxicity, or hearing loss. Luckily, his hearing is perfect and in fact, we think he has the mouse ears of Uncle Danny, his godfather! We then made our way to the Pediatric Oncology Department at UVA and had a wonderful appointment with our new pediatric oncologist. The only downside to this appointment was that it was over 3 hours long! Edward was essentially beside himself by the end of the day. Since he has learned to crawl, the only thing he wants to do is crawl, crawl, crawl and not be held by his parents.
We discussed his diagnosis at length and his likely treatment regimen. Retinoblastoma (also called rb for short) is one of the more 'common' of the 'rare' pediatric cancers. Because of this, there is a fairly standard treatment regimen. The basic tenet of treatment is to use a combination of systemic chemotherapy delivered by a medical oncologist and local therapy (laser therapy, thermotherapy, cryotherapy, etc) delivered by an ocular oncologist (an ophthalmologist). The systemic chemotherapy is used to shrink the size of the tumors to the point that they are amenable to the local therapy. Edward's tumors are currently so big that if they delivered only local therapy to the whole tumor, it would damage a large part of his retina and lead to vision loss.
The chemo regimen that we discussed consists of approximately 6-8 cycles of three drugs: carboplatin, vincristine and etoposide given every 3-4 weeks. I'll discuss the details of the chemo in a future post. Each round of chemo will be preceded by an eye exam under anesthesia (also called an EUA) to monitor the regression of the tumors and to potentially deliver local therapy if applicable. In between each cycle, he will need to have weekly blood draws to monitor his complete blood count (CBC) - which measures his white blood cells, red blood cells and platelets. The point of chemotherapy is to target rapidly dividing cells within the body and eliminate them through a variety of mechanisms. In very oversimplified terms, cancer occurs when a certain part of the body starts to rapidly divide and grow without restriction leading to tumor formation. For example, in Edward's case, he most likely has a defective part of his chromosome 13. The part that is defective typically controls or regulates the overproliferation of certain cells in the body, mostly in the eye. Thus, due to this defect, a small portion of his retinal cells are growing abnormally without restriction = tumor growth. Fortunately, tumor cells grow much faster than almost all other cells in the body, allowing chemotherapy to selectively target abnormal cell growth and 'ignore' normal cell growth. The rub is that the bone marrow naturally rapidly divides and produces new cells constantly. Thus, a side effect of chemotherapy is to 'deplete' one's bone marrow. In other words, Edwards ability to produce white blood cells (which help fight infections), red blood cells (which deliver oxygen to tissues) and platelets (which help your blood clot) will be inhibited. Monitoring of these counts will be very important as he might need transfusions along the way or other medications to help boost his cell lines. Enough technical detail for now. Following our oncology appointment on Tuesday afternoon, we got word from one of Katie's family friend's that we were able to get an appointment at the Wills Eye Institute on Wednesday morning. We quickly packed up, started driving and arrived in Philadelphia late Tuesday evening.
Whew. I will cover Wednesday, Thursday and Friday in the next post...
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